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I love school

A fun day for me, is a day filled with learning new things.

When my brain is occupied, my body is much calmer than when I am bored.

To have a calm body is absolute bliss.

I am astonished to see how my body is acting since I am attending UCT OHS (University of Cape Town Online High School) . I have never been this happy before. I can see that my body looks almost normal when I am busy with my schoolwork. I have never before had so much control over my stupid body as I have when I study intricate work. I have to work very hard to keep up with the schedule I have to stick to. I struggle to keep up, but so does the other kids. I am so proud of my Science marks. I got 49/50 which is the best thing since I was most scared of failing this subject. I am very concerned that I still have to get permission from SACAI.  

I have to add that I am very grateful for the support we get from the UCT OHS-team. I have given my Support Coach and Wellbeing Team member extra work because of my disabilities, but they are great in supporting me.

I have met my Afrikaans teacher . She is also very friendly and tried to help me with the questions I had.

I have to be optimistic, or I’ll get depressed. Being optimistic is easy now that I am doing work that is difficult enough that I understand why revision is necessary. Before I started Grade 10, I was extremely bored with my schoolwork. Now I have to apply my mind and I love every minute of it. I have to say, I am now not going to get such good marks any more, but that is okay. I have proofed that I am clever. So, now I can just enjoy the learning process and that is great to say.

I am so happy to be in a school, but I know I’ll have to proof to my teachers that I deserve to be there. This is something normal children do not have to do. They are considered good enough to attend school until they proof otherwise. For people like me, that is not the case. I hope I have what it takes to make it to the end of matric. No matter what happens, I have proven myself to me and no one will be able to rob me of that experience and for that I shall be for ever grateful.

I am free (4)

Acceptance, my key to freedom. CONTINUED (PART 4 of 4)

My acceptance of myself would not have been possible without:

6.         People, I cross paths with, who accept me for my brain and my personality. My body no longer stops me from connecting with other people.

There are two groups of people in my life. One group is the ones who know me from before I could communicate and then there is the group that have been getting to know me now, ever since my words can come out. These are 2 different groups of people who have played an important role in my path to accepting myself, for different reasons, with my flaws and all.

The first group is also divided into 2 subsections:

  • The people who got to know me and wrote me off. We should not judge these people, because they had good reason to do so. Before my words could come out, I was angry and frustrated because I was struggling so much, my body was uncontrollable and they really couldn’t have helped to not like me. I understand this.
  • The second group, under this section, are people who got to know me without words and saw me at my very worst, and yet kept believing in me, loved me despite what I did. These are just a handful of people, but each of them is like treasures that are incredibly precious to me. Your love means more to me than you will ever understand. Your love gave me hope in my darkest hours and made me keep trying even though my chances of ever escaping from my prison of fear and anxiety sometimes seemed very bad.

Your love for me is worth more to me than all the therapies I’ve ever done.

We need it so much to not feel rejected while we are struggling with our difficult bodies. Your love helped me not to give up, when giving up seemed to me to be my only way out. Thanks, is all I can say. Your love has saved me.

The second group is the people who get to know me with my words and all. You are also very important.

You make me forget the dark ghosts of the past. You make me hope for a beautiful future with friends and people who respect me for my brain and my heart. To have hope of being able to show people that under this messy body I have a smart brain and a good heart, is something I haven’t had for a very long time.

That doesn’t mean I expect everyone to love me. Not everyone likes my humor or things I love. It’s not necessary for everyone to love me. The very fact that I can show the world who I am, with my words, is enough for me. Being able to converse with strangers is something that is difficult for many people. For me, it was impossible to talk to anyone, for my whole life, until a few years back. If I get the chance to talk to strangers now, I’m like a kid getting a gift. I can see people struggling to make sense when they hear my mommy’s voice, but it’s me talking, my words. At first we struggle to make the person accept that these are my words even though they hear my mother’s voice, but when they have made the connection, people enjoy talking with me.

Being able to talk to other people, is an incredible privilege for me and something I never thought would ever be possible. This is the most enjoyable for me. When people accept me in such a way that they later strike up a conversation with me on their own, or include me in their conversation, this is the ultimate pleasure for me. Then I know the person really sees me for who I am and has respect for my heart and brain.

People think at first, it’s a funny thing to talk to me, but when they get to know me, they later find out that I’m also just a human being who also likes to talk about ordinary things. That’s when my heart knows that person sees my whole being. My whole life, not just my funniness. There aren’t many people who have arrived here yet, but those who is have, is worth more than 100 others who are still on their way.

Thank you to each of you. You make me feel like a complete human being with a place in the world.

7.         Time to heal from old wounds

Getting to where I am now is a process.

It’s been a long process. There were a lot of ups and downs and there will certainly still be plenty. There were many tears and even wounds and blood. There was joy and little glimmers of hope. There was despair and hopelessness.

There was enough good to keep us going and enough bad that sometimes we had to stop and take a breath before we could move on. There were days when nothing worked, days that went well and days when things just got all messed up. There were days when my heart was broken into thousands of pieces, and days that I broke the hearts of others.

Getting to where I am today, was a lot of hard work, harder than most people would have been able to do. My mother stood by me, even though it wasn’t easy for her. Without her, I would never have been able to do it.

Time has been merciful to us. We can now look back and say that we took the time we got and healed. We worked, and sowed, and now we can harvest.

We can count our blessings because we see the light.

We are calm, the best place to be.

I have peace in my heart, about my past and my future.

Ek is vry (4)

Aanvaarding, my sleutel tot Vryheid. VERVOLG (DEEL  4 van 4)

My aanvaarding van myself sou nie moontlik gewees het sonder:

6. Mense wat oor my pad kom wat my aanvaar vir my brein en my persoonlikheid. My lyf keer my nie meer om met ander mense kontak te he nie.

Daar is 2 groepe mense in my lewe. Die een groep is die wat my ken van voor ek kon kommunikeer en dan is daar die groepe wat my nou, vandat my woorde kan uitkom, leer ken. Dit is 2 verskillende groepe mense wat om verskillende redes ‘n belangrike rol gespeel het in  my pad na aanvaarding van myself met my gebreke en al.

Die eerste groep is ook opdeelbaar in 2 onderafdelings:

  • Die mense wat my leer ken het en my afgeskryf het. Ons moet nie die mense oordeel nie, want hulle het goeie rede gehad om dit te doen. Voor my woorde kon uitkom was ek kwaad en gefrustreerd omdat ek so gesukkel het, my lyf was onbeheerbaar en hulle kon regtig nie gehelp het om nie van my te hou nie. Ek verstaan dit.
  • Die tweede groep onder hierdie afdeling is mense wat my leer ken het sonder woorde en my op my heel slegste gesien het, en tog in my bly glo het, vir my lief gewees het ten spyte van wat ek aangevang het. Hierdie is net ‘n handjie vol mense, maar elkeen van hulle is soos skatte wat vir my ongelooflik kosbaar is. Julle liefde beteken vir my meer as wat julle ooit sal verstaan. Julle liefde het my hoop gegee in my donkerste ure en my laat aanhou probeer al het my kanse om ooit te ontsnap uit my tronk van vrees en angs op stadiums maar baie sleg gelyk. Julle liefde vir my is vir my meer werd as al die terapieë wat ek al gedoen het. Ons het dit so nodig om nie verwerp te voel terwyl ons so sukkel met ons moeilike lywe nie. Julle liefde het my gehelp om nie moed op te gee nie, toe moed op gee vir my na my enigste uitweg gelyk het. Dankie is al wat ek kan sê. Julle liefde het my gered.

Die tweede groep is die mense wat my leer ken met my woorde en al. Julle is ook baie belangrik. Julle laat my die verlede se donker spoke vergeet. Julle laat my hoop op ‘n mooi toekoms met vriende en mense wat my respekteer vir my brein en my hart. Om die hoop te hê om mense te kan wys dat ek onder hierdie deurmekaar lyf ‘n slim brein en ‘n mooi hart het,  is iets wat ek baie lank nie gehad het nie. Dit beteken nie dat ek nou verwag dat almal van my gaan hou nie.

Nie almal hou van my humor of van goed waarvan ek hou nie. Dit is nie nodig dat almal van my hou nie. Die blote feit dat ek vir die wereld kan wys wie ek is, met my woorde, is vir my genoeg.

Om met vreemde mense te kan gesels is iets wat vir baie mense moeilik is. Vir my was dit onmoontlik om met enige iemand te kan gesels, vir my hele lewe, tot ‘n paar jaar terug. As ek nou die kans kry om met vreemde mense ook te gesels, is ek soos ‘n kind wat ‘n geskenk kry. Ek kan sien hoe mense eers sukkel om die kloutjie by die oor te kry wanneer hulle my mamma se stem hoor, maar dit is ek wat praat, my woorde. Ons sukkel eers om die persoon te laat aanvaar dat dit wel my woorde is al hoor hulle my mamma se stem, maar wanneer hulle die konneksie gemaak het, gesels mense gou gou land en sand met my. Om met ander mense te kan gesels, is dus vir my ‘n ongelooflike voorreg en iets wat ek nooit gedink het ooit moontlik sal wees nie. Dit is vir my die lekkerste lekker.

Wanneer mense my so aanvaar dat hulle later uit hul eie met my ‘n gesprek aanknoop , of my insluit by hulle gesprek, is dit vir my die top punt van plesier. Dan weet ek die persoon sien my regtig vir wie ek is en het respek vir my hart en brein. Mense dink eers dit is ‘n snaaksigheid om met my te gesels, maar wanneer hulle my leer ken, kom hulle later agter dat ek ook net ‘n mens is wat ook hou daarvan om  oor gewone dinge te gesels. Dit is dan wanneer my hart weet daardie persoon sien my hele menswees. My hele menswees, nie net my snaaksigheid nie. Daar is nog nie baie mense wat hier gekom het nie, maar die wat wel daar is, tel meer as 100 ander wat nog oppad is. Dankie vir elkeen van julle.  Julle laat my soos ‘n volledige mens voel met ‘n plek in die wêreld.

7. Tyd om te genees van ou wonde

Om te kom tot waar ek nou is, is ‘n proses. Dit was ‘n lang proses. Daar was baie op’s en af’fe en daar sal verseker nog baie wees. Daar was baie trane en selfs wonde en bloed. Daar was vreugde en klein sprankies hoop. Daar was mismoed en wanhoop. Daar was genoeg goed om ons te laat aanhou en genoeg sleg dat ons soms moes halt roep en eers moes asem skep voor ons kon verder. Daar was dae wat niks gewerk het nie, dae wat als mooi geloop het en dae wat dinge net deurmekaar geloop het. Daar was dae wat  my hart in duisende stukkies gebreek is, en dae wat ek ander se harte gebreek het. Om te kom tot waar ek vandag is, was baie harde werk, harder as waarvoor meeste mense sou kans sien. My mamma het my bygestaan, al was dit vir haar ook nie maklik nie. Sonder haar sou ek dit nooit gemaak het nie.

Tyd was ons genadig, want ons kan nou terugkyk en sê dat ons die tyd gevat het wat ons gekry het en gesond geraak het. Ons het gewerk en gesaai en nou kan ons oes. Ons kan ons seëninge tel, want ons sien die lig.  Ons is rustig en dit is die beste plek om te wees. Ek het vrede in my hart oor my verlede en my toekoms.

I am free (3)

Acceptance, my key to freedom. (PART 3 of 4)

This is a translation of the blog originally written in Afrikaans at https://wordpress.com/post/mysilentvoice.blog/443

My acceptance of myself would not have been possible without:

3.          Knowledge about why my body works the way it works

I UNDERSTAND WHY MY BODY DOES WHAT IT DOES AND WHY IT DOESN’T DO WHAT I WANT IT TO DO.

Understanding this, enables me to accept my inabilities, make peace with my disability, and learn to live with it. Before I knew why my body is so difficult to control, it made me very depressed and anxious. Now that I understand why my body doesn’t work like other people’s, I’m much calmer about it and when I’m calm, I can actually get more done with my body.

4.         My own ability to make my body function better by using my knowledge and making plans:

Because I now know how my body works, I was able to process the information in my brain and get to know my body.

I learned, among other things, what things impact my body’s functioning. I tested it out myself to see what makes a difference on my body. I now know e.g. how important sleep is to me, and what and when I eat. Knowing all the things that affect my body is my best way to get more control of my body. And more control over my body means a better life for me.

I can prepare better now if I know there is a difficult manageable situation on the way. I can also say when it’s better for me, before I’ve even tried, not to take on a hard-to-handle situation. I learn when it is better to try for myself and when it is better to ask for or accept help. We, e.g. plan escape routes for me out of difficult manageable situations so that I can have a chance to retire with dignity when my body fails me.

It’s so important for me, at this point, to be allowed to cut my own path open through the numerous obstacles that lie all over my path, so that I can learn for myself what works for me and what doesn’t. I make an effort to make the knowledge, about how and why my body works the way it works, my own, do my own tests, and make my own plans. I’m always going to have to live with my disability. It is therefore very important that I learn how to manage my disability in the best possible way so that I can do the best I can.

5.         My mother’s respect for me for allowing me to decide for myself how I want to do things even though it means that sometimes I’m going to make mistakes about not wanting to follow her advice.

Being allowed to have a say on your own life, is something that doesn’t automatically happen in the life of someone who is like me. It is accepted that I will not be able to be independent anyway and therefore it is also accepted that I have to settle according to other people’s ideas and expectations.

It’s not fair to me or other people like me. I also have dreams and plans and ideals and expectations about my future. It saddens me a lot when I talk about this. Because it’s something that’s so hard to write about, I haven’t touched it before. Now is the time for me to talk about it.

Being disabled doesn’t mean we don’t also think about our future, like other people. We also think about the future, and we have to live with what we hear and see other people say about our future. Like other people, we are also concerned about what will become of us.

My brain is not affected, I can think and understand. I know what the odds are that I can expect an independent future. This is zero. Yet, like other people, I also want to dream about my future and do everything in my power to pursue my dreams as well.

I want to be allowed to pursue my dreams.

Even though it may sound ridiculous to other people, I also have dreams and ideals and also deserve an opportunity to make it come true. It’s not right that others just give me one look and decide I can’t do something. We have to fight against our own disability and then the disabled box in which the world wants to push us. It’s a double fight.

I am very fortunate because my parents give me the opportunity to pursue my dream of going to school. Even though it’s not something other people understand, it’s my dream and my parents give me a chance to pursue it, despite others’ questions and disbelief. They help me realize my dream, they give me space to make my own decisions, they help me pursue my dreams. It makes a huge difference in my life.

Being able to make my own decisions, and allow me to say what I want, is the greatest form of honor and respect I have ever received in my life.

No one has any idea how much this means to me. My mom doesn’t speak for me anymore, she gives her voice to me so I can speak for myself. It’s the most beautiful thing anyone can do for me. It gives me the courage to stand up for others like me who are not so fortunate.

To be able to make my own decisions

is freedom.

Being able to make my own decisions

is a life I’m entitled to as well.

Being able to make my own decisions

makes me strong.

Ek is vry (3)

Aanvaarding, my sleutel tot Vryheid. VERVOLG (DEEL 3 van 4 )

My aanvaarding van myself sou nie moontlik gewees het sonder:

3.   Kennis oor hoekom my lyf werk soos hy werk

EK VERSTAAN NOU HOEKOM MY LYF MAAK SOOS HY MAAK EN HOEKOM HY NIE WIL MAAK SOOS EK WIL Hê HY MOET MAAK NIE. Dit maak dat ek my eie onvermoens kan aanvaar, vrede maak met my gestremdheid en leer om daarmee saam te leef. Toe ek nie geweet het hoekom my lyf so aweregs is nie, het dit my baie depressief en angstig gemaak. Noudat ek verstaan hoekom my lyf nie werk soos ander mense s’n nie, is ek baie rustiger daaroor en as ek kalm is, kan ek sowaar meer uitgerig kry met my lyf.

4. My eie vermoë om my lyf beter te laat werk deur my kennis te gebruik en planne te beraam:

Omdat ek nou weet hoe my lyf werk, kon ek die inligting in my brein verwerk en my lyf leer ken.

Ek het onder andere geleer wat ‘n invloed kan hê op my lyf se werking. Ek het dit self uitgetoets om te sien wat ‘n verskil op my lyf maak. Ek weet nou bv hoe belangrik slaap, en wat en wanneer ek eet, vir my is. Kennis van al die goed wat my lyf beïnvloed, is my beste manier om meer beheer oor my lyf te kry. En meer beheer oor my lyf beteken ‘n beter lewe vir my.

Ek kan bv nou beter voorberei as ek weet daar is ‘n moeilik hanteerbare situasie oppad. Ek kan ook sê wanneer dit vir my beter is, voor ek nog eers probeer het, om nie ‘n moeilik hanteerbare situasie aan te durf nie.  

Ek leer wanneer dit beter is om self te probeer en wanneer dit beter is om hulp te vra of te aanvaar. Ons werk bv. ontsnappingsroetes vir my uit uit moeilik hanteerbare situasies sodat ek kans kan kry om met waardigheid uit die stryd te tree wanneer my lyf my in die steek laat.

Dit is so belangrik vir my op hierdie stadium om toe gelaat te word om my eie pad oop te kap deur die talle hindernisse wat oral in my pad lê sodat ek self kan leer wat vir my werk en wat nie. Ek doen moeite om die kennis, oor hoe en hoekom my lyf werk soos hy werk, my eie te maak, my eie toetse te doen, en my eie planne te maak. Ek gaan vir altyd met my gestremdheid moet saam lewe. Dit is daarom baie belangrik dat ek leer hoe om my gestremdheid op die beste moontlike manier te bestuur sodat ek die beste kan doen wat ek kan doen.

5. My mamma se respek vir my om my toe te laat om self te besluit hoe ek dinge wil doen al beteken dit  dat ek soms foute gaan maak oor ek nie haar raad wou volg nie.

Om ‘n sê oor jou eie lewe te hê, is iets wat nie outomaties gebeur in iemand wat soos ek is, se lewe nie. Dit word aanvaar dat ek in elk geval nie onafhanklik sal kan wees nie en daarom word dit ook aanvaar dat ek my maar moet skik volgens ander mense se idees en verwagtinge. Dit is nie regverdig teenoor my of ander mense soos ek nie. Ek het ook drome en planne en ideale en verwagtinge oor my toekoms. My hart raak baie seer as ek hieroor praat. Omdat dit iets is wat so moeilik is om oor te skryf, het ek dit nog nie voorheen aangeroer nie. Dit is nou tyd dat ek daaroor praat.

Om gestremd te wees beteken nie ons dink nie ook aan ons toekoms, soos ander mense nie. Ons dink ook en ons moet saamlewe met wat ons hoor en sien ander mense oor ons toekoms sê. Ons is dan ook, soos ander mense, bekommerd oor wat van ons gaan word.

My brein is nie aangetas nie, ek kan dink en verstaan. Ek weet wat die “odds” is dat ek ‘n onafhanklike toekoms te wagte kan wees. Dit is nul. Tog wil ek ook, soos ander mense, oor my toekoms droom en alles in my vermoe doen om ook my drome na te jaag. Ek wil toegelaat word om my drome na te jaag.

Al klink dit dalk vir ander mense belaglik, ek het ook drome en ideale en verdien ook ‘n geleentheid om dit waar te laat kom. Dit is nie reg dat ander my net een kyk gee en besluit ek kan iets nie doen nie. Ons moet baklei teen ons eie gestremdheid en dan nog die gestremde boksie waarin die wereld ons wil druk. Dit is ‘n dubbele stryd.

Ek is bitter bevoorreg, want my ouers gee my die geleentheid om my droom om skool te gaan, na te jaag. Al is dit nie iets wat ander mense verstaan nie, dit is my droom en my ouers gee my die kans om dit na te jaag, ten spyte van ander se vrae en ongeloof. Hulle help my om my droom te verwesenlik, hulle gee my ruimte om my eie besluite te neem, hulle help my om my drome na te jaag. Dit maak ‘n reuse verskil in my lewe.

Om my eie besluite te kan neem, en my toe te laat om my eie sê te sê, is die grootste vorm van eer en respek wat ek nog ooit ontvang het in my lewe. Niemand het ‘n idee hoeveel dit vir my beteken nie.

My mamma praat nie meer namens my nie, sy gee haar stem vir my sodat ekself kan praat. Dit is die mooiste ding wat iemand vir my kan doen.

Dit gee my die moed om op te staan vir ander soos ek wat nie so bevoorreg is nie.

Om my eie besluite te kan neem,

is Vryheid.

Om my eie besluite te kan neem,

is ‘n lewe waarop ek ook geregtig is.

Om my eie besluite te kan neem

maak my sterk.

I am free (2)

Acceptance, my key to freedom. (PART 2 of 4)

This is a translation of the blog originally written in Afrikaans at https://wordpress.com/post/mysilentvoice.blog/427

My acceptance of myself was an important step on my path to Freedom from my prison of anxiety and fear.

I had to fight a lot with this.

My life is not easy. I will always have to fight a battle to be heard and accepted. None of that has changed. I’m also far from giving up the fight to let my voice, and others like me ‘s voices, be heard,

but my heart is calm about my past and my way forward.

My acceptance of myself would not have been possible without:

1.         Faith

I had to believe, even if I didn’t see, or even hoped anymore for, in a good life being possible with my body and my life as it was and is. I see now I didn’t believe in it for nothing, God provided. With all my flaws and all, God loves me. He considers me worthy enough to do His work, to carry out His message, even if I am without voice. How can this not make someone feel good enough?

2.         Communication

Communication has completely changed my life. Without it, my life was really very bad.

It’s about so much more than being able to say I’m hungry/thirsty. Without communication, I couldn’t go to school either and no one knew or understood me. I was bitterly lonely even though I was in a school. Now that I can communicate, my life is so different.

Because I can communicate, my loneliness is no longer my only friend.

My words allow me to introduce myself to others and make me known to people. Because people now get to know me for my brain and my heart, there are actually people who like me.

A very important joy that communication has brought me is that I can “talk” about my feelings. It’s as if a door opens when I can tell my mommy what’s bothering me and why my body reacts the way he does. My heart calms down almost immediately when we talk about things, because without communication it’s like we’re both like a balloon being blown up until we explode at some point. This part of communication is probably one of the biggest contributions to my Freedom from anxiety and fear.

3.         Knowledge about why my body works the way it works

Since starting S2C (Spelling to Communicate), we’ve learned so much. Besides being able to communicate, the most important thing we’ve learned is why my body works the way it works, and why my body doesn’t want to work the way I want him to work.

My body is not obviously disabled. I have all my body parts. All my body parts can do what they are supposed to be able to do. But the pathways from my brain to my body’s parts, (which I have to use to get the parts, I have, to move or perform movements with), are disabled. That’s why I can’t speak, even though I have all the parts one needs to be able to form speech with. My brain doesn’t get my speech producing parts moving to form speech. To form speech, there are many parts that need to move together.

This disability is not only limited to my speech, but also all over my body. That’s why I can’t perform movements that I want to or plan to perform. On top of it all, the messages to my body parts gets mixed up as well.  

So,

I hear what people are saying,

I understand what someone is saying,

I know how I want to react,

I want to respond,

but I don’t get my body to do what I want it to do.

It therefore happens that I would e.g. walk while I would rather sit down, or the other way around.

To get my body to perform the movements I want him to do, I have to deliberately and purposefully train my brain and my body to work together to get my body and my brain to engrave that combination of brain pathways and movements so that it eventually automatically falls into place when I want to use it. This is easier said than done. Practicing a simple movement like this sometimes can take months or even years. It’s super frustrating.

My emotions can also throw a spanner in the works with this process – good or bad emotions can equally hamper my work on my body.

My body can also form bad paths and get stuck in patterns. That’s why I’m so struggling to stop doing certain bad habits, e.g., picking my nose. Most of these habits are too bad or shameful to even mention here and are something I’m very ashamed of and really don’t want to do. Unfortunately, those paths have been engraved in my brain already and it is very difficult to get them erased again. It always amazes me how easily bad paths form and how much effort I must make to form good paths. However, I also understand that it’s about different parts of my brain that I use.

I’m not going to explain further about this right now, because what I actually want to say is: I UNDERSTAND WHY MY BODY DOES WHAT IT DOES AND WHY IT DOESN’T DO WHAT I WANT IT TO DO. Understanding this, enables me to accept my inabilities, make peace with my disability, and learn to live with it. Before I knew why my body is so difficult to control, it made me very depressed and anxious. Now that I understand why my body doesn’t work like other people’s, I’m much calmer about it and when I’m calm, I can actually get more done with my body.

TO BE CONTINUED

Ek is vry (2)

Aanvaarding, my sleutel tot Vryheid. (DEEL 2 van 4)

My aanvaarding van myself was ‘n belangrike stap op my pad na Vryheid vanuit my tronk van angs en vrees.

Ek moes baie baklei hiermee. My lewe is nie maklik nie. Ek sal altyd ‘n stryd moet stry om gehoor en aanvaar te word. Niks daarvan het verander nie. Ek is ook nog lank nie klaar gestry om myself, en ander soos ek, se stemme te laat hoor nie, maar my hart is rustig oor my verlede en my pad vorentoe. 

My aanvaarding van myself sou nie moontlik gewees het sonder:

1.Geloof

Ek moes glo, selfs al het ek nie gesien nie, of selfs meer gehoop nie, op ‘n goeie lewe met my lyf en my lewe soos dit was en is. Ek sien nou ek het nie verniet geglo nie, God het voorsien. Met al my gebreke en al, het God my lief. Hy ag my waardig genoeg om Sy werk te doen, Sy boodskap uit te dra, selfs al is ek sonder stem. Hoe kan dit iemand nie goed genoeg laat voel nie?

2.Kommunikasie

Kommunikasie het my lewe totaal verander. Sonder dit was my lewe regtig baie sleg.

Dit gaan oor soveel meer as om te kan sê ek is honger/dors. Sonder kommunikasie kon ek ook nie skool gaan nie en het niemand my geken of verstaan nie. Ek was bitter eensaam al was ek kastig in ‘n skool. Noudat ek kan kommunikeer, is my lewe so anders.  Omdat ek kan kommunikeer, is my eensaamheid nie meer my enigste vriend nie. My woorde maak dat ek my aan mense kan bekend stel. Oor hulle my leer ken vir my brein en my hart, is daar “actually” mense wat van my hou.

‘n Baie belangrike vreugde wat kommunikasie vir my gebring het, is dat ek kan “praat” oor my gevoelens. Dit is asof ‘n deur oopmaak wanneer ek vir my mamma kan vertel wat my pla en hoekom my lyf reageer soos hy doen. My hart raak amper dadelik rustig wanneer ons gesels oor goed, want sonder kommunikasie is dit asof ons al twee is soos ‘n ballon wat opgeblaas word totdat ons een of ander tyd ontplof. Hierdie deel van kommunikasie is seker een van die heel grootste bydraes tot my Vryheid van angs en vrees.

3.Kennis oor hoekom my lyf werk soos hy werk

Sedert ons met S2C begin het, het ons so baie goed geleer.  Behalwe vir om my in staat te stel om te kan kommunikeer, is die belangrikste ding wat ons geleer het, hoekom my lyf werk soos hy werk en hoekom my lyf nie wil werk soos ek wil hê hy moet werk nie.

My lyf is nie ooglopend gestremd nie. Ek het al my parte. Al my parte kan doen wat hulle moet kan doen. Maar die paadjies van my brein na my lyf se dele, wat ek moet gebruik om die parte wat ek het te kry om te beweeg of bewegings mee uit te voer, is gestremd. Dit is waarom ek nie kan praat nie, al het ek al die parte wat mens nodig het om mee spraak te kan vorm. My brein kry nie my spraakparte beweeg om spraak te vorm nie. Om spraak te vorm, is daar baie parte wat moet saambeweeg .

Hierdie gestremdheid is nie net tot my spraak beperk nie, dit is oor my hele lyf. Dit is waarom ek nie bewegings kan uitvoer wat ek beplan om uit te voer nie. Die boodskappe na my parte raak nog deurmekaar ook.  

So,

ek hoor wat mense sê,

ek verstaan wat iemand sê,

ek weet hoe ek wil reageer,

ek wil reageer,

maar ek kry nie my lyf om te doen wat ek wil hê dit moet doen nie.

Dit gebeur daarom dat ek bv sal loop terwyl ek eerder wou sit, of anders om.

Om my lyf te kry om bewegings uit te voer wat ek wil hê hy moet doen, moet ek my brein en my lyf doelbewus oefen om saam te werk om my lyf en my brein te kry om daai kombinasie van breinpaadjies en bewegings vas te kap sodat dit uiteindelik outomaties in plek val wanneer ek dit wil gebruik. Dit is makliker gesê as gedaan. Om ‘n eenvoudige beweging so in te oefen vat soms maande of selfs jare. Dit is super frustrerend.

My emosies kan ook ‘n spanner in die “works” gooi met hierdie proses – goeie of slegte emosies kan ewe veel my werk aan my lyf belemmer.  

My lyf kan ook slegte paadjies vorm en vashaak in patrone. Dit is hoekom ek so sukkel om sekere slegte gewoontes, bv om in my neus te grawe, op te hou doen. Meeste van hierdie gewoontes is te sleg of skandelik om hier te noem, en is iets waaroor ek baie skaam is en regtig nie wil doen nie. Daardie paadjies is ongelukkig al vas gekap en dit is bitter moeilik om dit weer uit gevee te kry. Dit verbaas my altyd hoe maklik slegte paadjies vorm en hoeveel moeite ek moet maak om goeie paadjies te vorm. Ek verstaan egter ook dat dit gaan oor verskillende dele van my brein wat ek gebruik.

Ek gaan nie nou verder hieroor verduidelik nie, want wat ek eintlik wil sê is: EK VERSTAAN HOEKOM MY LYF MAAK SOOS HY MAAK EN HOEKOM HY NIE WIL MAAK SOOS EK WIL Hê HY MOET MAAK NIE. Dit maak dat ek my eie onvermoens kan aanvaar, vrede maak met my gestremdheid en leer om daarmee saam te leef. Toe ek nie geweet het hoekom my lyf so aweregs is nie, het dit my baie depressief en angstig gemaak. Noudat ek verstaan hoekom my lyf nie werk soos ander mense s’n nie, is ek baie rustiger daaroor en as ek kalm is, kan ek sowaar meer uitgerig kry met my lyf.

Vervolg

I am free (1)

Acceptance, the key out of my prison. PART 1 (OF 4)

This is a translation of the original blog written in Afrikaans.

Anxiety is no longer my prison.

Anxiety has always been my biggest enemy. He is no more.

My anxiety about my inability to show that I am a human being, with a brain and a heart, which functions properly, held me captive.

I was a slave to fear. Fear of going back to the time before I could communicate when no one understood me, and everyone thought I was just stupid and difficult. My fear of those dark days becoming my reality again drove me fiercely.

My prison is no longer a prison.

I will always have to fight the ghosts of my past who want to send me back to prison. Especially when my body lets me down.

I know how freedom feels. I won’t let anything, or anyone rob me of it.

My prison is no longer my prison.

Acceptance, the key out of my prison.

My body is different from most other people’s.

Even though I look like other people, my body functions differently. That’s how it is for me, for now and forever. My body isn’t going to suddenly just get right unless a miracle happens, or a miracle cure is discovered.

And for the first time, I can say that I’m okay with it.

I’m the way I am, and my heart is calm about it.

Even though I still get upset about my body’s shenanigans,

I’m still okay.

Even though my body’s inabilities causes that I learn hard but still do badly in my tests because I cannot spell fast enough on my letterboards, within the test time limits,

I’m still okay.

Even if my body makes me look ridiculous or do stupid stuff,

I’m still okay.

Even though I sometimes must stay home when others go out.

I’m still okay.

Even though I sometimes must decide to give up things I really wanted to do,

I’m still okay.

My acceptance of myself was an important step on this path to freedom.

I had to fight a lot with this. My life is not easy. I will always have to fight a battle to be heard and accepted. None of that has changed.

I’m also far from giving up the fight to let my voice, and others like me ‘s voices, be heard,

But my heart is calm about my past and my way forward.

My Aunt, Driekie, recently reminded me that my God is in charge with this song:

Father I Place Into Your Hands

Ingrid DuMosch
Words: Jenny Hewer (b. 1945) © 1975 Thankyou Music/Admin. by kingswaysongs.com, http://www.kingswaysongs.com

 
Father, I place into your hands
The things I cannot do,
Father, I place into your hands
The things that I’ve been through.
Father, I place into your hands
The way that I should go,
For I know I always can trust you
Father, we love to see your face,
We love to hear your voice.
Father, we love to sing your praise
And in your name rejoice.
Father, we love to walk with you
And in your presence rest,
For we know we always can trust you.
 
.
Father, I place into your hands
My friends and family.
Father, I place into your hands
The things that trouble me.
Father, I place into your hands
The person I would be,
For I know I always can trust you.
 
Father, I want to be with you
And do the things you do.
Father, I want to speak the words
That you are speaking too.
Father, I want to love the ones
That you will draw to you,
For I know that I am one with you.
 
 
 

EK IS VRY (1)

Aanvaarding, die sleutel uit my tronk (Deel 1 van 4).

Angs is nie meer my tronk nie.

Angs was nog altyd my grootste vyand. Hy is nie meer nie.

My angs oor my onvermoë om te kan wys dat ek ‘n mens met ‘n brein en ‘n hart is, wat werk, het my gevange gehou.

Ek was ‘n slaaf van vrees. Vrees om weer terug te gaan na die tyd voor ek kon kommunikeer toe niemand my verstaan het nie en almal gedink het ek is net dom en “difficult”. My vrees dat daardie donker dae weer my werklikheid word, het my kwaai gejaag.

My tronk is nou nie meer ‘n tronk nie.

Ek sal altyd moet baklei teen die spoke van my verlede wat my weer wil terugstuur tronk toe. Veral wanneer my lyf my in die steek laat.

Ek weet nou hoe Vryheid voel. Ek sal nie toelaat dat enige iets of iemand  my daarvan beroof nie.

My tronk is nou nie meer my tronk nie.

Aanvaarding, die sleutel uit my tronk.

My lyf is anders as meeste ander mense sin.

Al lyk ek soos ander mense lyk, my lyf werk anders. Dit is hoe dit is vir my, vir nou en vir altyd. My lyf gaan nie skielik net reg raak nie, tensy ‘n wonderwerk gebeur of ‘n wonderkuur ontdek word nie.  En vir die eerste keer kan ek sê dat ek oraait is daarmee.

Ek is soos ek is en my hart is rustig daaroor.

Al raak ek nog vies oor my lyf se streke,

ek is nog steeds oraait.

Al beteken my lyf se onvermoens dat ek hard leer, maar steeds sleg doen in my toetse omdat ek nie vining genoeg gespel kry op my bord binne die toets tydslimiete nie,

ek is nog steeds oraait.

Al laat my lyf my belaglik lyk of simple goed aanvang,

ek is nog steeds oraait.

Al moet ek soms maar tuisbly wanneer ander uitgaan,

 ek is nog steeds oraait.

Al moet ek soms besluit om goed prys te gee wat ek baie graag wou doen,

ek is nog steeds oraait.

My aanvaarding van myself was ‘n belangrike stap op hierdie pad na Vryheid.

Ek moes baie baklei hiermee. My lewe is nie maklik nie. Ek sal altyd ‘n stryd moet stry om gehoor en aanvaar te word. Niks daarvan het verander nie.

Ek is ook nog lank nie klaar gestry om myself, en ander soos ek, se stemme te laat hoor nie,

maar my hart is rustig oor my verlede en my pad vorentoe.  

My tannie Driekie het my onlangs daaraan herinner dat my God in beheer is met hierdie liedjie:

Father I Place Into Your Hands

Ingrid DuMosch

Words: Jenny Hewer (b. 1945) © 1975 Thankyou Music/Admin. by kingswaysongs.com, http://www.kingswaysongs.com

Father, I place into your hands

The things I cannot do,

Father, I place into your hands

The things that I’ve been through.

Father, I place into your hands

The way that I should go,

For I know I always can trust you

Father, I place into your hands

My friends and family.

Father, I place into your hands

The things that trouble me.

Father, I place into your hands

The person I would be,

For I know I always can trust you.

Father, we love to see your face,
We love to hear your voice.
Father, we love to sing your praise
And in your name rejoice.
Father, we love to walk with you
And in your presence rest,
For we know we always can trust you.

Father, I want to be with you

And do the things you do.

Father, I want to speak the words

That you are speaking too.

Father, I want to love the ones

That you will draw to you,

For I know that I am one with you.  

A lot has changed since I can communicate.

April 2022

Please note: I am still non-speaking.

Here follows a translation of a blog originally written in Afrikaans by Nicolaas

This holiday was all so different from what it was in the years I couldn’t communicate that it’s hard for me to believe that this is not just a beautiful dream I’m living.

Being able to go to parties, and talk to other people, is not something I ever thought possible for me.

My mom is so confident in her role as my Communication and Regulation partner now, that she can assist me to talk to other people in almost any situation. It’s so beautiful now that we can let myself have a conversation with strange people. We’ve talked to a lot of different people about all the things we would have been able to talk about if I could talk like a normal person.

Being part of a normal conversation, about everyday stuff, is better than being able to get on the TV and show the whole world that people like me are normal. People believe it more when they see it in action.

Attending social events with my family is a big challenge for me.

My sensory challenges make a social occasion with noise and smells and a lot of stuff to see, very difficult for me. It is so difficult that in the past it was better for me not to attend such events. My oversteered body and mind couldn’t handle it at all. Now my body is still challenging, and the sensory stumbling blocks are still everywhere in my path, but now that I can chat, I can handle all these challenges much better

By chatting, I can take my mind away from my anxiety about my body and my sensory problems.

Being able to tell my mom when I can’t handle it anymore makes a huge difference. This used to be a problem for me. The more oversteer my body and mind became, the more anxious I became about my body letting me down, the harder it became for me to regulate myself at such social events. Now it’s completely different because now I can tell my mommy if we have to go home because my body and mind get oversteered. It makes me feel calm about knowing that I’m not going to get oversteered in the company. It’s very humiliating to lose it, because of my oversteered body and mind, if I can’t handle it anymore. It makes me very anxious when I feel I’m struggling to regulate myself, even more so if there are other people who see me while losing control over my body.

Now that I know that I can say when I no longer have the challenges under control, I am much calmer and now it is also possible for me to enjoy such opportunities.

That’s why my life is so much better now, even though my body and my sensory challenges are still just as bad as before.

Being able to lead the life of an ordinary person, is a dream that many of my non-speaking friends also dream of. That’s why it’s important for me to talk about it.

I faced the “ultimate” sensory challenge when I attended the Meatmaster sheep auction. It was a challenge, to say the least. The auctioneer’s voice made me green with jealousy. That someone can be blessed with such a voice, took my breath away. It’s one job my quiet voice won’t be able to make me do. Because my mother was with me, I was able to talk to her all the time, without sound, while the sheep were being auctioned. It was a big win for me to be able to attend. Even though I couldn’t keep it to the end, it was still an incredible experience for me.

Let’s see what new, normal, stuff I can still master.

Baie het verander vandat ek kan kommunikeer

April 2022

Hierdie vakansie was alles so anders as wat dit was in die jare wat ek nie kon kommunikeer het nie, dat dit vir my moeilik is om te glo dat hierdie nou nie net ‘n mooi droom is wat ek belewe nie.

Om na partytjies te kan gaan en met ander mense te kan gesels is nou nie iets wat ek ooit gedink het my beskore sal wees nie.

My mamma is nou so oulik met my kommunikasie dat ek met ander mense kan praat. Dit is nou al so mooi dat ons my kan laat ’n gesprek voer met vreemde mense. Ons het al met heelwat verskillende mense gesels oor allerande goed wat ons oor sou kon gesels as mens soos ‘n normale mens kon praat.

Om deel van ‘n normale gesprek te wees, oor allerdaagse goed, is beter as om op die TV te kan kom en vir die hele wêreld te wys dat mense soos ek normaal is. Mense glo makliker wat hulle sien as wat hulle hoor.

Om saam met my gesin sosiale geleenthede by te woon is ‘n groot uitdaging vir my.

My sensoriese uitdagings maak ‘n sosiale geleentheid met geraas en reuke en baie goed om te sien, vir my baie baie moeilik. Dit is so moelik dat dit in die verlede vir my beter was om nie sulke geleenthede by te woon nie. My oorstuurde lyf en gemoed kon dit glad nie hanteer nie. Nou is my lyf nog steeds ‘n uitdaging  en die sensoriese struikelblokke is nog steeds oral in my pad, maar noudat ek kan gesels kan ek al hierdie uitdagings baie beter hanteer

Deur te gesels kan ek my gedagtes weg vat van my angstigheid oor my lyf en my sensoriese probleme.

Om vir my mamma te kan sê as ek nie meer kan uit hou nie, maak ook ‘n reuse verskil.  Voorheen was dit ‘n probleem vir my. Hoe meer oorstuur my lyf en gemoed geraak het, hoe angstiger het ek geraak oor my lyf my in die steek wou laat, hoe moeiliker het dit vir my geword om my by sulke sosiale geleenthede te reguleer. Nou is dit heeltemal anders, want nou kan ek vir my mamma sê as ons moet huis toe gaan omdat my lyf en gemoed oorstuur raak. Dit laat my rustig voel oor ek weet dat ek nie oorstuur gaan raak in die geselskap nie. Dit is baie vernerderend om dit te verloor, as gevolg van my oorstuurde lyf en my gemoed, as ek dit nie meer kan hanteer nie. Dit maak my baie angstig as ek voel ek sukkel om myself te reguleer, nog meer so as daar ander mense is wat my sien terwyl ek beheer verloor oor my lyf.

Noudat ek weet dat ek kan sê wanneer ek nie meer die uitdagings onder beheer het nie, is ek baie rustiger en is dit nou vir my ook moontlik om sulke geleenthede te geniet.

Dit is nou hoekom my lewe soveel beter is, al is my lyf en my sensoriese uitdagings nog net so sleg soos voorheen.

Om die lewe van ‘n gewone mens te kan ly is n droom wat baie van my non-speaking vriende ook droom. Dit is waarom dit vir my belangrik is om daaroor te praat.

Ek het die “ultimate” sensoriese uitdaging trotseer toe ek die Meatmaster veiling by gewoon het. Dit was n geweldige uitdaging, om die minste daarvan te sê. Die afslaer se stem het my groen gemaak van jaloesie. Dat ‘n mens nou met so n stem geseën kan wees, het my asem weggeslaan. Dit is nou een werk wat my stil stem my nie sal kan laat doen nie.

Omdat my mamma by my was, kon ek die heeltyd met haar gesels, sonder klank,  terwyl die skape opgeveil word. Dit was ‘n groot oorwinning vir my om dit te kon bywoon.  Al kon ek dit nie enduit hou nie, was dit nog steeeds vir my ‘n ongelooflike ervaring.

Kom ons sien watter nuwe normale goed ek nog kan baas raak.

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